Organ donation

Linda - Interview 33

Female
Age at interview: 51

Brief outline: Linda had diabetes since the age of 22 and had a kidney and pancreas transplant in 2004, aged 44. In 2009, she had blood cancer. She has been well since then and enjoys spending quality time with her grandchildren, cooking and interior design.

Background: Linda is married and has 2 adult children. She is a volunteer for Transplant Support Network. Ethnic background / nationality' White British.

Audio & video

Linda had diabetes since the age of 22 and regular kidney function tests. Around 2000, she had been feeling unwell and went into hospital with what she thought was pelvic inflammation, something she’d had before. Tests showed, however, that she’d had kidney failure, and this came as a huge shock.

Over time, Linda became increasingly tired, irritable and unable to sleep. As she became weaker, she was no longer able to work.

For six months, Linda had to have peritoneal dialysis. This involves using the patient’s peritoneum in the stomach as a membrane across which fluids and dissolved substances are exchanged from the blood. Fluid is introduced through a permanent tube in the stomach and flushed out either every night while the patient sleeps or via regular exchanges throughout the day. Its main advantage is that the patient can have treatment without visiting the hospital.

Linda then went onto heamodialysis, a method for removing waste products such as creatinine and urea, as well as free water from the blood when the kidneys are in renal failure. She had to go into hospital three times a week for about two years, and found the process of having needles in her arms very painful.

This was a very difficult time for Linda and her family. Linda had no energy to do normal daily activities. Her husband took over the cooking, household jobs, looking after their daughter and pets, as well as working. Linda said she also missed out on precious time with her teenage daughter.

In January 2004, Linda received a call for her transplant. Her donor was a 22-year-old who’d had a brain haemorrhage.

The surgery went well but, shortly afterwards, Linda had chronic diarrhoea and spent a week in hospital. The diarrhoea lasted for three months and turned out to be oesophageal thrush. Her medications were changed and the diarrhoea stopped. She was well after that but, because of the diabetes and kidney failure, had very poor eyesight and is now registered blind. She also has to take painkillers for diabetic neuropathy to help with the constant pain she experiences. She has chronic fatigue syndrome, too, but said she does not let any of these hold her back.          

A year after her transplant, Linda studied for a HND in social science. She also did a lot of voluntary work and, two years after her transplant, became a volunteer for Transplant Support Network. This is a nationwide network that provides telephone support to patients, family and carers of all solid organ transplants (http'//www.transplantsupportnetwork.org.uk/about.htm). 

Around 2009, Linda was diagnosed with irritable bowel syndrome. However, when she mentioned her symptoms to the specialist nurse [transplant coordinator], Linda was asked to come in for some tests. These showed that she had blood cancer. Linda had chemotherapy and was very ill during this time with infections.

Over the last few years, Linda said she has looked and felt well. She enjoys spending quality time with her grandchildren, cooking and interior design. She praised the health care she’d received but felt there was a lack of follow-up care and support, such as counselling. Linda now supports other people who are have had transplants.
 

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